20 Summertime Boredom Busters

Summer is an awesome time to relax, spend time with friends and family, and take a little break from school and work. However, come mid-July kids start to get restless, parents start to loose their patience and everyone is ready to be back on a schedule, right?  The limited mobility, hand function and communication makes it hard to find fun things our girls are able to participate in.  Here are some great tips to get you through that summertime lull with your Rett Girl!

1.  Summer Reading Program - visit your local library for a reading program where your Rett Girl can earn some fun prizes or check out this one from Barnes & Noble - you read 8 books to your Rett Girl (or if she can read you can have her do it) then fill in the form and take it to your local Barnes & Noble so she can pick out a FREE book!

2.  Museum - check out a museum in your area.  Kids' Hands-on museums are great!  Your Rett Girl may not be running around and interacting with every experiment, but she'll for sure be able to do some of them with help and it's a great learning environment.

3. Picnic Lunch - head out to your local park or just spread a blanket out under a tree in your yard.

4. Home camp out - All kids like to camp out! pitch a tent in your back yard if your Rett Girl is able to handle that, if not set up some blow up mattresses in the basement or the family room.  If your girl is on a feeding tube remember that the pole is mobile, wheel it into your room and sleep with her on blow up matresses or into siblings room so they can have a slumber party or have the siblings sleep in her room if that's where she's comfiest.  Just make it FUN!

5. Bonfire/smores - Head outside for the evening, set up a bonfire and make smores.  No bonfire outside? No problem, make them in the oven - layer graham cracker, chocolate and a marshmallow on a cookie sheet and broil in the oven until the marshmallow is golden brown, pull them out and top with another graham cracker - then enjoy it outside!  TIP - marshmallows are gluten free and check your grocery store for gluten free graham crackers.


6. Make your own sprinkler that you can push your daughter through in her wheelchair!  This is TONS of fun but you may want to set it up the night before, they say it takes a half hour but I'd give myself an hour for sure!  Instructions and supply list Here

7. Kids Bowl Free - sign up HERE.

8.  Visit an Adaptive Playground

9.  Go to the movies!  check out the deals at Cinemark theater if you have one near you.  Or, if your Rett Girl gets antsy at the theater check out Sensory Friendly Films that may be playing in your area.

10. Visit your local zoo

11. Mess-Free Finger painting - Check it out HERE!  Great for our girls who hand mouth, you don't have to worry about them eating the paint!

12.  Make an outdoor tent and read!

13.  Read a book and watch the movie.  It's always fun to read a book together and then go check out the movie to see how it compares.  One of our favorites is Judy Moody and the Not so Bummer Summer!  Grab the book at your local library then watch the movie on Netflix.

14.  Visit your local farmers market

15.  Face painting/body painting - Kids LOVE to get their face painted at fairs, why not do it at home!  Check out this Klutz Body Crayon Book and get creative drawing on bracelets and fake flip flops!

16.  Spa Day!  Do mani's and pedi's at home.

17.  Dance Party - Crank the music and DANCE! You can even buy a mini disco light to add to the fun!

18. Catch a frog/snake/crayfish or buy a fish to feed and observe - what a fantastic learning experience!

19.  Visit an indoor playground - indoor playgrounds are popping up everywhere and many of them are sensory friendly and parent friendly which means you can hop right in and enjoy the fun or help your Rett Girl navigate, play and slide.

20. Ride Bikes!  If your Rett girl doesn't have a bike yet look into it HERE.  Bikes offer lots of benefits and their just FUN! Here is a link to a Special Needs Bike Trailer by Wike and something called the i-GO!

Gluten-Free Cookout

A favorite summer activity is getting together with family and friends for a cookout, however, somewhere between the hot dogs and the pasta salad a gluten-free kiddo can feel kind of left out, and hungry!  Don't worry, we've got you covered with a few ideas!  Check out these great gluten-free recipes that are perfect to bring to a cookout so your Rett Girl has something great to eat (that everyone else will love, too).

Have a favorite recipe to share? Be sure to leave it in the comments section below!

Cobb Egg Salad - from kitchendaily.com

Ingredients

• 3 tablespoons nonfat plain yogurt
• 3 tablespoons low-fat mayonnaise
• 1/4 teaspoon garlic powder
• 1/4 teaspoon freshly ground pepper
• 1/8 teaspoon salt
• 8 hard-boiled eggs (see Tip)
• 1 ripe avocado, cubed
• 2 slices bacon, cooked and crumbled
• 1/4 cup crumbled blue cheese

Directions

1. Combine yogurt, mayonnaise, garlic powder, pepper and salt in a medium bowl.

2. Halve eggs and discard 4 of the yolks (or save for another use). Add whites and the remaining 4 yolks to the bowl and mash to desired consistency. Gently stir in avocado, bacon and blue cheese.

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Gluten Free Chick Pea Apple Slaw - from Joyous Health

Ingredients:

1 Granny Smith apple, peeled and grated
Juice of 1/2 a lemon, freshly squeezed
14 oz can of organic chickpeas or navy beans, drained and slightly mushed with a fork
1 carrot, peeled and grated
1/4 cup pumpkin seeds
1/2 cup dried cranberries
1 tsp red wine vinegar
1 tsp walnut oil
4 slices of your favourite gluten-free bread, toasted

Method: Squeeze the lemon juice onto the grated apple. Mix the apples, beans, cranberries, sunflower seeds and carrot together. In a separate dish, mix the red wine vinegar together with the walnut oil. Add the dressing to the apple mixture

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And for dessert, check these out:

Chocolate Chip Banana Squares - from Brunch at Saks

1 1/2 C. gluten-free flour (I use a mix of Bob's Red Mill white rice flour, tapioca flour, potato starch)
1/2 tsp. gluten free baking soda
1/2 tsp. baking powder (I like Rumford's because it's aluminum-free)
1/4 tsp. salt
2 ripe bananas, mashed
5 Tbs. coconut oil (or any vegetable oil)
3/4 C. cold water
1 tsp. vanilla

1/2 c. chocolate chips (Enjoy Life are gluten, dairy, soy, nut -free).
optional 1/2 C. of  walnuts 

Preheat oven to 350 F. Line a 9x9 square cake pan with parchment paper. Set aside. In a bowl, mix flour, baking soda, baking powder, and salt. In a separate bowl, mash bananas and stir in oil, water, and vanilla until well blended. Make a well in dry ingredients and pour in wet mixture. Stir until just blended. Add in chocolate chips and give it one last toss. Pour into prepared cake sheet.  Bake 40 min, or until toothpick comes out clean. 

If Not Just For a Little While....

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

We have laughed and cried at the words you all have been able to put down on paper. You are all amazing fathers, advocates, and fighters. You embody the love and hope and joy within your girls, and inspire others to do the same.

Thank you.

READ POSTS BY THESE GREAT DADS!
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  
Justin Johnson, Nora's dad: Just a Girl

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TODAY'S POST: Blog #8: Manny Gutierrez, Anna's dad

 

The other day, I was on a walk with my son, Gabriel, when I received a phone call from a colleague of mine. Suddenly, I noticed Gabe was almost half a block ahead of me. When he arrived to the street corner, he looked both ways and crossed the street. He is six years old, and we have never let him cross the street by himself. I ran up to him and asked, “Gabe, why are you walking ahead of me?” He looked up and said, “Because I want to look like an eighth grader, Dad.”

I remember when I was a kid and wanting to walk ahead of my parents by a few paces, as if I were walking by myself. However, that wasn’t until sixth grade at the earliest. Here was this little muppet of a man, my first grader, trying to walk tall in his tiny shoes.

I am not ready for this moment in parenting

“Gabe,” I begin to say, “I think you are a very smart and good young boy. I believe that if I told you to walk from our house to your class, by yourself, that you could. I believe that once you were done, you would know how to get home, by yourself. But I am walking with you, not just because I want to know that you are safe, but because I want to be with you. And when you grow up to be a big eighth grader, guess what? I’m still going to want to walk with you. And when you are in college, I am still going to want to walk with you. So Gabe, can you do me a favor?”

Looking contemplatively away from me, he asked, “Yes, Dad?”

“Can you just walk with me right now, just for a little while?’

He looked up at me, thought about it for a second, and said, “Sure.”

My daughter Anna is three years old. She has Rett Syndrome. Despite the obvious hardships that come with that severity of a diagnosis for her and for our family, I am truly honored to be my children’s father.

However, like most parents, I get busy with so many other things in life that seem so important in our day-to-day. I find myself growing more concerned about where our money is going each month then how my kid’s days went. I become more worried about different projects I am working on then trying to do something with my family. And yet, with my constant distractions of “responsibilities,” I turn to my daughter, pick her up, and she looks deeply into me, with nothing but thanks and happiness that I took the time to be
with her.

When I held her today, I was reflecting on my talk with Gabe, and how all of a sudden the roles were reversed. She looked at me as if to say, “Can you just be with me right now, if just for a little while?”

I knew from a young age I wanted to have children. I looked forward to the days that I could spend time with a family of my own. Being the good dad. The one who would teach my son to play ball, to jump into the day-to-day and be the good father I was always meant to be.

Then Rett Syndrome happened.

Suddenly you are not allowed to just mail it in for a day anymore. You can’t come home and just take the time to yourself to get ready for the next leg of it. You are either in or you are out in this Rett world that we live in.

It’s not enough to be good. You have to be great.

Because when your daughter looks up at you with those eyes, you have to be prepared to meet that gaze with integrity.

Knowing that you were there that day… To carry her when know one else could, because you are the one with the strongest shoulders. To fill-in the blanks, because as amazing as their mothers are, they don’t have the answers to everything. To catch them when they lay tired from their struggles, because everyone at some time reaches a breaking point. And then they will turn to you for comfort.

It maybe a lonely path at times, but it is the one thrust upon us by circumstance, by fate, by God… Whatever way, we were chosen. And to that I call us a brotherhood, bound by a virtue that all men and women search for and spend their lives trying to attain: unconditional love.

I never knew I could love so much.

For one Father’s Day, I would wish that I would not have to be so much to her, but allow her to just be so much to me.

And that some day, I can say to her, “Can you do me a favor? Can you just walk with me? If not just for a little while?”

-Manny Gutierrez

"Just a Girl"

 

Happy Father's Day! We asked Rett Dads to be our guest bloggers for this past week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

READ POSTS BY THESE GREAT DADS!

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"
Roger Brooks, Juliana's dad: All Our Girls Are Special  

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Blog #7: Justin Johnson, Nora's Dad

My daughter has Rett Syndrome. There are many things she is, as a result of Rett Syndrome:

She is unable to say words like you and me.
She is unable to go exactly where she wants.
She is overwhelmed by too much noise, too much light or too many people.
She may always struggle with obstacles that keep her from living a life that our society might call “normal.”

When the world-at-large sees my daughter and people like them, they see the barriers. They see the disability. The handicap.

But I have seen my daughter be an over-comer. I watched her struggle to crawl, struggle to walk and struggle to eat. And I have watched her excel. My daughter loves ice cream, ponies, puppies, princesses and plenty of hugs. She likes to play with kids her age, gets scared and sometimes angry. She can be naughty. She needs to be cuddled, she needs to play and she loves to explore.

Sometimes, I get home from work and she is still napping. I crawl into her bed, give her a squeeze and kiss her cheek. She squints at me from the very, very corner of her eyes. And then she smiles and buries her face in the pillow, waiting for me to tickle her or hug her.

Whatever we face, we'll face together as long as it is within our power. Because we don't see barriers - only milestones. My daughter has Rett Syndrome. But she is just a girl.

-Justin Johnson

All Our Girls Are Special …

 

Father's Day is tomorrow! We asked Rett Dads to be our guest bloggers for this past week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.  

 

READ THESE PAST DADDY POSTS:

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."

Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."
Bill Farnum, Ella's dad: So Weak So Strong  
David Luntz, Maryjane's dad: "My Little Country Girl"

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Blog #6: Roger Brooks, Juliana's dad

 

It’s hard to believe that just three years ago, we received the most devastating news of our lives, our beautiful Juliana was diagnosed with Rett Syndrome. In the three years since Juliana’s diagnosis, our family has learned a lot about Rett and we continue to learn more every day. We’ve often said the most frustrating thing about Rett is it is so darn inconsistent. Throughout all of this though, what I’ve learned, Rett or no Rett, all of our girls are special.

Kristy and I are fortunate to have been blessed with two beautiful girls- Juliana and Olivia. They fill our lives with laughter, fun, excitement, and of course tears and frustration at times. They light up my life and when we get to spend quality time together being silly, reading books, or just sitting watching a movie, I’m reminded of how special my girls are.

Living with Rett Syndrome by no means is an easy task. In fact, I’m not ashamed to say it’s brought me to my knees on several occasions. It’s difficult to watch Juliana struggle throughout her day to do the simplest of things.. In the same breath, I watch Olivia cope and deal with watching her big sister struggle and the patience she must display when things don’t quite go the way they should. They are both incredible little girls that are mature beyond their years. But if we look at all of our girls as special, Rett is just a wrinkle in the day, that’s all it is. Don’t get me wrong, some days; it’s a wrinkle that becomes a tidal wave, no doubt, but a wrinkle none the less. It’s all in how you look at it.

This father’s day, I’m just thankful; thankful for my special girls that fill my heart with so much love. I’m so proud of the beautiful young ladies they’re becoming. I’m proud that they have one of the best mom’s in the world, teaching them every day what it means to be strong, graceful, hardworking, and respectful, with or without disability. Proud that we’ve surrounded them with the same strong role models that love them more than they will ever know. I’m just darn proud and thankful of the life that we’ve been given; trying every day to appreciate all the ups and downs.

God has trusted me to care for these two wonderful little girls that I just know in my heart have purpose and meaning. I know they will do incredible things with their lives, and you know what, they already have in many, many ways. Kristy jokes often and has even blogged that Juliana and Olivia were “never more devoted sisters.” They are everything that a father would want their children to be; loving, compassionate, humble, graceful, and strong. They are my girls, my daughters, and they will always be special to me, Rett or no Rett.

-Roger Brooks

My Little Country Girl

 

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:

Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."

Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."

Bill Farnum, Ella's dad: So Weak, So Strong

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Blog #5: David Luntz, Maryjane's dad

 

When I found out I was having a daughter I was like in Heaven. I was really looking forward to raising a kid again and running around crazy, raising her as a person who appreciated wildlife and enjoyed hunting, atv'ing, riding horses and basically just being a country girl. 

It was Oct 16th 2008 when that changed.  I had Mj at the moose lodge with me as we were setting up for that night's NRA banquet. I was walking with her to the bathroom when she fell to the floor with a grand mal seizure. There's nothing so scary in life as watching your daughter go through that. The hospitals, eegs, all the tests continued and she continued to have a series of petite seizures that sent us to the hospital twice more. 

In a period of three weeks my dreams were shattered. There was a period of about three weeks before they narrowed the diagnosis to Rett, they first tested for Angelmans. It was a pretty traumatic experiance. She is now 5. Three years have past. She is a terror! LOL... We are very fortunate.

Mj is an extremely strong girl, very active. She rides horses, and loves riding in the atv and going hunting with us.  She loves animals, and actually has her own little mini farm that we are building for her. Not only does she love animals but she is, I would say, animal crazy.. I guess like most little girls. She has chickens (her favorite), 3 mini horses, a goat, fish, 2 kitties and 2 dogs. Did I say she likes animals? 

We have plans to add an outside aviary for turkeys as she likes to walk around with them and actually will allow her to sit right next to them and pet them. Next year we want to build her a pen for her most absolute favorite animal - piggies. 

The joy I get from her facial expressions and laughter over chickens and piggies is unbeatable.  I am replacing the old dreams with new dreams and enjoying the little moments, the smiles, occasional word or verbal response, the time we get to play togeather running around, hiding in blankets, playing on the slide, these are the best. We now realize she will be with us for the rest of our lives, and look forward to all the new experiances, watching her learn and grow. She is our world and my little country girl.  I couldn't be any happier. Maryjane Luntz my daughter.

- David Luntz

So Weak So Strong

With Father's Day coming up, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls. 

our other Daddy posts this week:
Pete Curry, Maisy's dad: "No Laughter? No fun? No thank you."
Bill Hileman, Brynn's dad: "Be Happy No Matter How Large the Obstacle"
Sean Schenk, Kristyn's dad: "I just have to love Kristyn with all my heart."

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Blog #4: Bill Farnum, Ella's dad

 

In late 2006, my wife Beth and I were desperate people, conducting searches on the internet until 2AM every night. We were not searching for the latest and greatest travel deals, or the newest YouTube video sensation. We were searching for all the information we could find on Autism spectrum disorders, as our daughter Ella had then recently received the first of numerous diagnoses. Doctors, therapies, causes, clinics, insurance coverage, special diets.... you name it, we were researching it.

Later in December of 2007, Ella was finally diagnosed with a debilitating neurological disorder called Rett Syndrome. It is a devastating genetic disorder that robs young girls of their speech and motor skills, and can leave them crippled and unable to communicate with the outside world.

When we received the diagnosis of Rett from our pediatrician, a stopwatch started ticking in my head. It comes and goes and can be louder on some days than others, but it is always there...tick, tick, tick. I don’t want to say that I speak for all parents of special needs children, but I know that I feel like the clock is always ticking down and that we can always be doing something to help better our children’s futures.

Parents of special needs children tend to “ask a lot.”  If you were not comfortable raising your hand in class in school, you are going to have a tough road ahead of you. We ask a lot of questions: Who is the best doctor for that? Does insurance cover it? Do you know of a good dentist that works with special needs? Where can I find diapers for a 13-year-old?

We ask a lot from our special needs children. We ask them to endure endless hours of physical, occupational and speech therapies. We ask them to eat just one more bite. We ask them what they want or need, possibly 50-60 times a day. And we ask them to please just keep breathing.

We ask a lot from our other children. We ask them to be patient while we work with our special kids. We ask them to understand things they will not comprehend for a very long time. We ask them to love their siblings unconditionally.

We ask a lot from our therapists. Can we double up appointments this week? What else can we try? How do YOU think she is doing?

We ask a lot of our children’s battery operated musical toys. I think we single-handedly made Duracell stock jump 2 1/2 points last week....

We ask a lot of our friends and family. We ask them to try and understand situations that they have never been in and may not be sure how to react or help out with. We ask them to understand that we can’t make it over again for dinner because Ella is having “a really bad day...” We ask them to just listen, a very hard thing to do.

We also ask a lot of ourselves. We ask ourselves to keep asking, and to never stop until our children can kick a soccer ball, have a tea party with their friends, and say “I love you Mommy and Daddy.”

And as much as we ask, we appreciate more. People that say “no problem, sign me up” or “just tell me what I can do to help” are what make us get up in the morning and start asking all over again...

I am a big fan of music and it is an integral part in our lives. One of my favorite bands is Gov’t Mule, an offshoot of the Allman Brothers. I was listening to one of their new songs the other night entitled “So Weak So Strong” and whoever wrote it must have a connection to Rett Syndrome as it describes our girls to a tee. It goes:

So weak so strong, nothing's forever in her universe
Bringing comfort, bringing pain, so weak so strong

So weak so strong, turning mountains into seas of dust
Finding courage when all hope is lost, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, there's only one of her in the universe
Bringing darkness, bringing light, so weak so strong

Men have died from half the pain she endures everyday
Many times I've seen her spirit fade away only to rise again

So weak so strong, she's never really what she seems to be
But life without her seems so bleak, so weak so strong


- Bill Farnum